Reporting community involvement in autism research: findings from the journal Autism

Participatory methods are having sweeping effects on research across the globe. To facilitate transparency around these methods, Autism introduced mandatory reporting of community involvement in January 2021. Here, we sought to determine the impact of this policy. To do so, we—a team of autistic and non-autistic researchers—searched for articles published in Autism in 2019, two years before policy implementation, and in 2022, one year after. We read 283 eligible articles and double coded each article for general information and details of community involvement. We found a fivefold increase (10.3% pre-implementation vs. 54.5% post-implementation) in the reporting of community involvement. Most articles reported involving community members distally, in consulting roles, with researchers retaining full decision-making power. Furthermore, most community involvement was reported in more applied than basic research. A significant minority of papers (17%), however, could not be coded, owing to insufficient or vague information. While this increase in the reporting of community involvement is encouraging, more efforts need to be directed towards (i) improving the transparency in the reporting of community involvement and (ii) increasing the frequency with which community members, especially Autistic people, share decision-making power equally with researchers—or even assume control of the research process.